I just have to ask this questions. Am I being selfish? I am so tired of dealing with this disease. My dad went to the ER today, with kidney stones. He is 73. He has heart issues and has a stint and a pacemaker. It is always a concern of ours when he has other things pop up. I cannot go to the ER and be with my mom as they run test on dad. It is to hard to take DH anywhere. There are other things too. I cannot do anything around the house. DH wants to help, and he cannot. I have someone coming in once a week to give me a break. My dad has wanted to take a trip with my mom and me and my two sisters, before he has valve replacement surgery. I do not have anyone to stay with DH. His mom has fallen 2 times when he was at her house. He has fallen 2 times at her house. She is 85. His sister lives away and his other 2 would be no help. Our daughter has stayed with him for me. She has a 9 month old and lives on the north side of town and is in the process of moving to their first home. I know that I should seek a place for him for respite for me. DH gets angry when the person comes to the house once a week. I know that he is mid to late stage six. I know this because he has trouble with his words and understanding any conversation. He needs help picking out clothes and putting them on now. He wanders at night. I hate it because he is still aware enough to know what is going on. He says he is getting better and nothing is wrong with him. I can tell by his face that he doesn't remember family members now. He is glued to me. He has a fear of me leaving to go anywhere. This disease robs all of us any sense of self. I am only 52 and am in a prison. I love him, but have been dealing with this for 8 years now. Just letting out my frustrations now. I know that all of you here understand the pain and the guilt that caregivers feel.
Jackie - same age difference here and my thoughts on this is....put him in respite, go on the trip with your dad and if dh doesn't like it that's too bad....you deserve to still have a little bit of a life and starting to take care of him when you were 44, you haven't gotten to enjoy your middle years. I know for me I was 46 and now at 56 I am getting my life back. You have to be selfish sometimes.
Wolf wrote something that has stuck with me and it goes something like this .....he is facing death and you are facing life.....he is safe (with care) you're aren't (you're still out there in the world making decisions, having to make a living and look after yourself by yourself your partner is gone).
It put things into prospective for me to......Buck up, get on with it and make a life.....maybe it's time for him to go into care and you set yourself free.
Jackie, you are not being selfish. Your husband and mine are at about the same stage on this dementia journey. The difference is that I am 62 (DH is 74), but it seems like I have been dealing with this disease forever. I took my first non medical respite break in June, and it did a world of good for me, and for my DH, as I was better able to deal with his behavior when I got home. And a real bonus for me was that I got a chance to visit my Dad, who is 97. I have another respite booked for September, and I am really looking forward to it, and it will also include a trip to see my Dad, since I don't know how much longer he will be around to visit.
You may never have another opportunity to spend some quality time with your parents and your sisters, so make the travel plans, put hubby in respite and go enjoy yourself! And stop feeling guilty, you are not selfish!
jackie, There is a difference between selfishness and self-preservation. Selfish = “concerned chiefly with one’s personal profit or pleasure at the expense of consideration for others.” Self-preservation = “a natural or instinctive tendency to preserve one’s own existence and protect oneself from destruction or harm.”
Your first responsibility (after keeping yourself alive) is to your husband, not to your parents. (Can't your sisters go to the ER with your father?) Amber’s suggestion about short-term respite care sounds good, but even if respite care is available, make sure you want to spend that time going on a trip, rather than just resting .
You are correct that you are in prison. I was, too, until my husband went into LTC almost 3 months ago. That got me out of prison and into a half-way house, which is much better. And don't confuse LTC with respite care. LTC is better because it gets you out into the community but with restrictions. Respite care is just a weekend furlough and then you have to go back behind bars.
You are only 52. I was 58 when we started down this road and this disease has made an old woman of me. Don’t let that happen to you, too.
Myrtle My sister did go with my mom and dad to the ER. They kept me informed. It's just that my family is so close. My parents have been there through everything with us. They have sacrificed so much for us. It is something that I want to do. It just upsets me I don't have that freedom to make that decision.
I really do not know what I would do if he was in respite. If he were in LTC, I would find a job again. That way I would be taking care of my future. I have not worked in 5 years to take care of him. At my age I will need to work a while before getting his pension or SS.
I feel that it already has made me old and what will be left when this is over.
Jackie, I agree with the others here. You are not being selfish. You've given up many years of your life to take care of your DH. Your larger family is just as important in your life. If it's feasible for you to put him in LTC, don't put it off because you feel a duty to care for him at home. Your duty (IMHO) is to care for him in whatever environment is best for him. In my case, by stage 6, my husband no longer felt safe at home and acted out all the time. Once I placed him (May 2013) he calmed down a lot and feels safe and content in his new community. Someone said something years ago that I've tried to live by. Paraphrasing, it goes something like this: We didn't cause it, we cannot cure it, we need to survive it. Some might perceive this as being callous, but I firmly believe that at a certain point, if possible, institutional care for our loved one is just the next step.
Dear jackie, I know what you mean about working. I am self-employed so I was able to keep working but scaled way down. But my income is nil and I have lost what should have been some of the most productive years of my working life. Now that my husband is in LTC, I am trying to build my business up again but I know it will never recover to the point it should be.
A study done by Met Life a few years ago found that caregivers lose a huge amount in income and social security and pension benefits. What it did not quantify was the lost plans, goals and opportunities.
In your first post you said you knew you needed to seek a place for your husband. I hope you are able to do that. Despite all the horror stories, there are some good places out there. If you could find one, then you could not only begin to work again but also spend a little more time with your parents.